Pediatric Palliative Care in the ICU

Noreen Crain, MD University of Virginia Charlottesville, Virginia, USA

Karen Boyle, RN University of Virginia Charlottesville, Virginia, USA

Palliative care in the pediatric intensive care unit (PICU) is a fundamental part of practice and affords the opportunity to journey with families as their children approach the end of life. In taking the time-honored pediatric focus on the family to its ultimate position, the pediatric palliative care team is family-centered, embracing the child and family as a unit, with all the resources and potential impediments that accompany it. Pediatric palliative care is collaborative, combining the expertise of multiple disciplines and providers with the thoughts and goals of the child and family.

Most importantly, pediatric palliative care is flexible, offering care to children at any stage of illness, coordinating therapies to manage any discomfort, assessing goals and translating them into cohesive treatment plans, and competently addressing new symptoms or new issues as they arise.

As the brief patient stories below suggest, the details of a given child’s care are tailored to that child and family. However, the principles of pediatric palliative care apply broadly to any patient.

Lakeesha—She is such a happy, friendly girl. She helps her mom around the house. She does well in school in a special education program. She has some cognitive impairment from the metabolic disease, but her personality is all sunshine. She has been sick like this before. She has even been in the PICU before, on a ventilator, in shock, with high acid and ammonia. She always recovered before. But something seems different this time.

Miguel—He was fine a few days ago. He was eating well, playful and active. Then yesterday he was fussy and had a fever. He was still drinking and his diapers seemed normal—he was just fussy. But this morning he was breathing strangely and wouldn’t wake up. How do we exist without him?

Trevor—No one can tell us how long he has, but we’re grateful for the time we’ve had. This winter has been bad with colds. He keeps coming back to the PICU needing to be intubated. The next time he gets sick at home, I think we should still call the rescue squad and have him intubated if he needs it … Maybe once we get him home, I won’t want to put him through all that again … Maybe we won’t be able to get him home … This morning he just seems so tired. He’s telling me in his own way that he’s ready.

The hallmarks of palliative care are pain and symptom management plans that harmonize with other goals of treatment. Infants and children in the PICU are vulnerable to experiencing pain, anxiety, shortness of breath, nausea and vomiting, seizures, even loneliness or grief. Excellent pediatric critical care anticipates, treats and reevaluates patients’ pain, discomfort and anxiety. The multidisciplinary approach to pediatric palliative care can complement the care standards for pain management, provide strategies for adequate treatment of symptoms, and maintain the emotional, psychological and spiritual needs of the child and family.

Pediatric palliative care is family-centered. The child with a chronic illness has a developmental understanding of health and illness, life and death. The child with an acute injury or illness may face uncertainty and can only rely on the honest and compassionate information he or she receives from the team and from parents. The parents, siblings, grandparents, friends, and others all have a dynamic response cognitively, emotionally, and spiritually to the child’s condition and its significance. The palliative care team has the luxury of spending an hour looking at family photos, listening to favorite songs and supporting the decision makers as they formulate goals. The caregiver approaches the family with cultural humility, allowing their collective experience and perspective on life to direct the conversation and prioritize the care.

Pediatric palliative care, like care for all children in the PICU, is collaborative. It integrates the primary attending physician, the involved subspecialists, and the palliative care team with the child and family. The palliative care team brings the expertise of medicine, nursing, social work, chaplaincy, pharmacy, physical, occupational and speech therapies, child life, education, and mental health. While each of these specialists may not be involved with a particular child, the care of an ill child in the PICU requires contributions from a broad range of disciplines. When that care is for a child and family potentially facing the end of life, the expertise of the many contributors must be enriched by the palliative focus with compassion and competence. Symptom management and alignment of therapies to family goals keep the abundance of team members focused.

Pediatric palliative care is ultimately flexible. As stated by the American Academy of Pediatrics, “The components of palliative care are offered at diagnosis and continued throughout the course of illness, whether the outcome ends in cure or death.” In the PICU, palliative care may involve the redirection of care with attention to comfort. Alternatively, palliative care in the PICU may involve organizing additional procedures and therapeutic regimens designed to make a child’s care at home easier. Families often need guidance around a turning point in the child’s illness, a point where the anticipated benefits of treatment and the burdens of those treatments must be weighed in light of the best prognostic information. The PICU provider must be alert to potential turning points to offer the child and family competent and compassionate medical information.

Finally, the flexibility of pediatric palliative care is demonstrated by the inclusion of bereavement care in the multidisciplinary approach. This includes bereavement care for colleagues and fellow providers, as well as the patient’s family members. Palliative care in the PICU is family-centered, approaching the child and family with cultural humility and designing comprehensive care appropriate to that family. It is collaborative, utilizing many resources available and facilitating communication among providers. It is flexible, offering pain and symptom management for patients at any stage of illness, designing goals of care, highlighting potential turning points in the course of critical illness, and following families and providers alike with bereavement care.